‘It saved my life’: Sarah Lukeman shares her rare leukaemia story

16 Dec 2022
We spoke to blood cancer survivor Sarah Lukeman about her cancer advocacy and journey with a rare form of leukaemia called acute promyelocytic leukaemia (APML).

Sarah with her daughters in 2006 (left) and 2022 (right).

IT WAS THE MOMENT THAT CHANGED EVERYTHING.

16 years ago, Carnarvon mum and chemical engineer Sarah Lukeman received a shock diagnosis of acute promyelocytic leukaemia (APML) at 38 years old. 

This was devastating news to her young family. Her daughters were only 4 and 6 years old, and she had just been diagnosed with a rare and rapidly fatal form of acute myeloid leukaemia.

“We were living in regional Western Australia, about 900 km from Perth, and I was the primary carer. So, it was a big shock for the whole family,” she said.

Sarah didn’t have obvious symptoms besides a low blood count that was picked up in an unrelated blood test, nor did she have any inkling she was sick. But just to make sure that it wasn’t a sign of serious illness, she flew out to Perth to see a haematologist and to have a bone marrow biopsy.

Carnarvon is a regional town situated 900km north of Perth.

A MIRACLE CURE

A day after the biopsy, Sarah was given the devastating news: she had APML.

APML is a rare subtype of acute myeloid leukaemia (AML) and one of the most common types of blood cancers in adults. It is the most aggressive blood cancer and progresses rapidly without immediate treatment. 

Every year, around 900 people are diagnosed with AML in Australia. Sadly, only 1 in 4 people will survive the first 5 years after being diagnosed. (1)

When Sarah was diagnosed, APML was considered one of the most fatal types of leukaemia with even lower survival rates. She was immediately admitted to hospital to start chemotherapy that day, and on her doctor’s advice, she went on a clinical trial only hours later. 

“Going on the clinical trial was the best decision I've ever made. It gave me access to the drugs that cured me. If I hadn’t been on that clinical trial, I would have had the normal treatment, which had a less than 5% survival rate,” she said. 

Sarah’s clinical trial became one of the first successful personalised medicine trials in Australia and New Zealand. She calls the combination of the novel drugs, all-trans retinoic acid and arsenic trioxide, a “miracle cure” that has led to advances in APML treatment, now considered a highly curable disease with a 5-year survival rate of up to 90%. (2)

THE ROAD TO RECOVERY

One of the biggest challenges Sarah faced was the stress of ensuring her daughters were taken care of while she was undergoing chemotherapy at a Perth hospital. 

"I needed to know that my kids were being looked after so I could relax and let everybody look after me,”
she said. 

It was a great relief for her when the Leukaemia Foundation organised play therapy for them, which supported their mental health and helped to explain what leukaemia was by using videos of actors dressed up as blood cells. Another trial Sarah went on allowed her to have chemotherapy at home. 

As part of her 2.5 years of treatment, Sarah received 5 months of chemo infusions.

"When it was time for me to undergo my second lot of treatment in the hospital, I got really depressed about the idea of being away from my kids. My haematologist got me on a program where the nurses brought the chemotherapy to where I was staying in Perth, which meant that I’d be at home in the mornings before the kids would go to school, instead of me being away and them having to visit me at the hospital. For a young family, it made things much easier. I couldn't take them to school, but I was there in the mornings and evenings,” she said. 

After 5 months of chemo infusions, Sarah underwent another 2 years of maintenance therapies. 

When Sarah completed her treatment, she was in ‘complete molecular remission’ and considered cured. She dedicated her energy to raising her daughters and discovered her new calling as a cancer advocate. 

"When you're so close to not being there for them, you want to give them all your time and do right by them. As they got older and were in high school, I was doing better and wanted to turn my experiences into something positive, so I got involved in cancer advocacy.”

LIFE AFTER CANCER

“Early-career researchers are our future. It's really important that young, promising and bright people like Heather, and particularly women, are supported with building their careers, because cancer research is a tough career.”

Today, Sarah is based in the Hunter Valley and her two daughters are now studying at the University of Sydney. Since becoming a cancer advocate in 2014, she is a passionate spokeswoman for women in STEM and equitable access to healthcare for Aboriginal and Torres Strait Islander peoples as well as Australians living in regional areas. 

I've lived regionally for most of my adult life and there isn't equitable access. The gap between outcomes for Aboriginal people and those in capital cities is a disgrace. It’s a privilege to be a cancer advocate because I can stand up for those who haven’t been given the platform to speak up,” she said. 

Dr Heather Murray is one of 14 early-career researchers being funded by Cure Cancer for the 2023 cohort.

Sarah has been working directly with cancer researchers in the Hunter Valley through the Hunter Cancer Research Alliance (HCRA) and for two years, she managed the consumer community involvement program, which helps researchers find a consumer to work with on a project. 

“Consumers like myself are great champions of cancer researchers because they really are saving lives and without them, we wouldn't be alive. We want the research to be translated into clinical practice as quickly as possible because it can be life and death for someone,” she said. 

Currently, Sarah is collaborating with Dr Heather Murray, whom she met through HCRA. Dr Murray is an emerging researcher whose novel project on acute myeloid leukaemia will be funded for a year by Cure Cancer’s annual BarbeCURE® campaign.  

References

  1. Leukaemia Foundation. Acute myeloid leukaemia (AML) [Internet]. Leukaemia Foundation; 2020 [updated 2022; cited 2022 Dec 10]. Available from: https://www.leukaemia.org.au/blood-cancer-information/types-of-blood-cancer/leukaemia/acute-myeloid-leukemia/ 
  2. Coombs CC, Tavakkoli M, Tallman MS. Acute promyelocytic leukemia: where did we start, where are we now, and the future. Blood Cancer J [Internet]. 2015 Apr 17 [cited 2022 Dec 10];5(4):e304. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4450325/

THIS SUMMER, YOU CAN MAKE A DIFFERENCE BY HOSTING A DELICIOUS BBQ TO RAISE FUNDS FOR VITAL CANCER RESEARCH THAT HAS THE POTENTIAL TO HELP PATIENTS WITH ACUTE MYELOID LEUKEMIA.